Diet

Low calorie diets, such as those used to reduce weight, or prolonged periods with little food may provoke an acute attack. It is therefore important to keep to a normal diet with regular meals, eating enough to maintain a desirable body weight. At least three regular meals should be taken each day. Some people, particularly women with pre-menstrual problems, may find it easier to eat small meals every three hours rather than three normal sized meals.

Nausea and sickness

For many patients, sickness and nausea in particular are a daily problem. Most patients will have their own remedies for dealing with these times, but detailed below are some helpful hints and tips.

Eat small and often: If you can’t face food, and you know that you will suffer with abdominal pains, eat a small amount of food every two to three hours. This will stop your stomach being completely empty which can increase nausea.

What should you eat? Eat easily digestible foods, but try to eat predominant carbohydrates. For example: bread, cereal, porridge, rice pudding, yoghurt, milk shakes made with bananas and milk, Avoid acidic foods and fruits, and try some nuts and seeds, such as pumpkin seeds for their calories, vitamins and minerals. Avoid coffee and tea; drink plenty of water to keep you hydrated.

How much should I eat? This depends on how nauseous or sick you are. Start very small, perhaps half of a slice of bread with a small amount of butter or a couple of teaspoons of yoghurt, and then try to gradually increase the amount each time. You should be aiming to consume in the course of a day the same amount of food that you would if you were only eating 3 normal sized meals.

Herbs and infusions: Try cutting up a half-inch piece of root ginger and infusing it in a mug of hot water. Leave for 5 to 10 minutes and then sip. If you wish to make it more palatable add a small teaspoon of honey to sweeten it. This infusion can be taken throughout the day. Flat ginger beer will also ease nausea.

Try an infusion of Basil leaves in hot water: a natural tranquilliser. It is said to be a tonic and to calm the nervous system, aid digestion and ease stomach cramps and nausea. Try to rest as much as possible between eating your meals. If you are being very sick, try making up a glucose solution to drink. Powered glucose is available from your local chemist.Return to top of page

Alcohol

This is a common trigger for attacks, so the best advice is don’t drink. This is particularly important for those who have had attacks. Even if you have not had an attack, it is still safest to avoid alcohol. If you do drink, keep intake low and avoid heavy red wines, brandy and other liqueurs.

Constipation

A common problem for a lot of patients, which if left, can lead to bloating, flatulence, nausea, sickness, bad breath, haemorrhoids and even more serious bowel complaints.

Try some of the remedies below:­

Eat small and often: This will encourage your bowel to work almost continuously in the process of digestion. Try small meals every two to three hours.

Drink water: For good digestion and peristalsis (the movement of your bowels) drink 4 to 6 pints of water a day. This will help to keep you hydrated and keep your motions soft and easy to pass.

Make time for going to the toilet: This may sound a strange thing to say, however many of us lead hectic lives looking after the family, working, housework, shopping etc, and find little time for ourselves. Try to establish a routine, and do not let anyone or anything interrupt that routine. Never put off the need to go to the toilet.

Natural remedies: Fresh pineapple contains a digestive enzyme called, bromelain. This helps to digest proteins and speed along the process of digestion. Tinned pineapple will not have the same effect, as the bromelain is lost in the canning process. Eat one or two slices of pineapple every day. Eat it on its own, preferably as a breakfast, or at the end of the day before going to bed. It should be eaten at least two hours before or after your last or next meal. Continue daily until a normal bowel action is achieved. Then eat a portion every other day to keep things working well. If your bowels become loose, eat less, conversely if you feel you need to soften the motions then eat a little more. You will soon find what suits you. If you are unable to get fresh pineapple or you do not like it, you can buy bromelain capsules from health food stores. Follow the instructions on the bottle.

Exercise: Regular physical activity helps to stimulate bowel movements, whereas sitting still for long periods can cause constipation. Walking is one of the best forms of exercise. Try to do some form of exercise every day for at least 20 minutes.Return to top of page

Internet fables

According to a site on the internet, there are a lot of foods that porphyrics shouldn’t be eating. One of our correspondents got very hot under the collar about broccoli, claiming it had caused her acute attacks.

We can only assume that she is actually allergic to broccoli, since there is no evidence that food or drink trigger porphyria symptoms, except for alcohol, and the specific triggers for PCT (which PCT patients should already know about).

As with any illness or discomfort, don’t assume (or let your doctor assume) that anything new is always due to the porphyria. Appendicitis isn’t! Some people with a porphyria also have food sensitivities or allergies (just like those without a porphyria) and these can get worse as you get older. If you’re not sure of the cause, cut out one thing at a time from your diet – for example, if it might be cheese, cut out cheese for a week, then eat some again and see if the symptoms return. If that wasn’t the cause, try cutting out something else.

If it proves difficult to track down, keeping a food diary may help. Note what you eat each day and when you feel bad. It may also be worth noting where you go. Noting where you’ve been may be enough to give you a clue to the cause.

The internet is a very useful source of information, but do use it with caution – try to find reputable websites. Unscrupulous people may try to sell you ‘cures’ which do nothing. Others may simply misunderstand evidence and perpetuate myths. The BPA was founded to give you reliable information so, if in doubt, do write to us or give us a call. We are in contact with a wide variety of porphyria specialists, so if we don’t know the answer to your question, we should be able to find out for you.Return to top of page